DMD - A Guide for Parents

Introduction

Most people reading this booklet for the first time will have just been
told that their son (or the child of a relative) has the disorder called
Duchenne muscular dystrophy. To be told that a son will lose the ability
to walk, the ability to perform most tasks that we take for granted
and have a life expectancy far shorter than normal is a distressing
experience for all concerned. However, remember that you are not alone.
Although there is increasing awareness of muscle problems in children,
many people have not heard of muscular dystrophy. They may find it difficult
to comprehend that such a serious disease has been diagnosed. Other
parents may have an intimate knowledge of the disease because another
family member has had it. Regardless, the diagnosis for them is none
the less devastating. It can be difficult to understand how a diagnosis
of muscular dystrophy has been made especially when parents may not
have even realised their child had a muscle problem.

To help parents better understand the diagnosis, the first section of
this booklet provides an overview of Duchenne muscular dystrophy, its
cause and how a diagnosis is reached. Subsequent sections offer more
information on medical, genetic, educational, social, emotional and
care issues.

IT
IS IMPORTANT TO UNDERSTAND THAT THE INFORMATION IN THIS BOOKLET REFERS
ONLY TO DUCHENNE MUSCULAR DYSTROPHY AND NOT TO OTHER FORMS OF MUSCLE
DISEASE WHICH MAY DIFFER MARKEDLY IN THEIR CLINICAL, GENETIC AND OTHER
ASPECTS.